write a 2-3 page (that means a minimum of 2 full pages and no longer than 3 full pages) paper (in APA format)

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How technology is empowering patients? A literature review

Jorge Calvillo PhD,*§ Isabel Rom�an PhD*†§ and Laura M. Roa PhD†‡§ *IT Health Scientist in Biomedical Engineering Group, †Professor, ‡Head of Biomedical Engineering Group, University of

Seville, Seville and §CIBER de Bioingenierı́a, Biomateriales y Nanomedicina (CIBER-BBN), Seville, Spain

Correspondence Jorge Calvillo

Escuela T�ecnica Superior de

Ingenierı́a

C. de los Descubrimientos

s/n 41092 Sevilla

Spain

E-mail: [email protected]

Accepted for publication

1 May 2013

Keywords: health information systems, medical informatics, patient

education, patient empowerment,

patient participation

Abstract

Background The term ‘Patient Empowerment’ (PE) is a growing

concept – so in popularity as in application – covering situations where citizens are encouraged to take an active role in the man-

agement of their own health. This concept is serving as engine

power for increasing the quality of health systems, but a question

is still unanswered, ‘how PE will be effectively achieved?’ Beyond

psychological implications, empowerment of patients in daily prac-

tice relies on technology and the way it is used. Unfortunately, the

heterogeneity of approaches and technologies makes difficult to

have a global vision of how PE is being performed.

Objective To clarify how technology is being applied for enhanc-

ing patient empowerment as well as to identify current (and

future) trends and milestones in this issue.

Search strategy Searches for relevant English language articles

using Medline, Scopus, ACM Digital Library, Springer Link, EB-

SCO host and ScienceDirect databases from the year 2000 until

October 2012 were conducted. Among others, a selection criterion

was to review articles including terms ‘patient’ and ‘empowerment’

in title, abstract or as keywords.

Main results and conclusions Results state that practical

approaches to empower patients vary in scope, aim and technol-

ogy. Health literacy of patients, remote access to health services,

and self-care mechanisms are the most valued ways to accom-

plish PE. Current technology already allows establishing the first

steps in the road ahead, but a change of attitude by all

stakeholders (i.e. professionals, patients, policy makers, etc.) is

required.

Introduction

As the appearance of the first Internet-based

applications supporting new methods of health-

care delivery, the potential of Information and

Communication Technologies (ICT) for chang-

ing the role of users has been well-known. 1,2

Experts predicted a range of benefits from the

efficient adoption of ICT in the health-

care domain. 3 For example, the possibility of

providing citizens with mechanisms for access-

ing information and knowledge required to

doi: 10.1111/hex.12089

understand their health status and to make

informed decisions. 4 ICT could also bring new

ways of connectivity among patients, users and

health providers to establish virtual communi-

ties in which end users adopt the role of

information providers for their peers. 5,6

Furthermore, technology would ease the devel-

opment of tools and solutions for maintenance

of healthy habits, education in health, self-man-

agement of chronic diseases and deployment

and use of Personal Health Records (PHR)

controlled by patients. 1

Finally, technology

promised to reduce economic costs and pro-

mote a more sustainable health care. 7

Patient Empowerment (PE) is a growing

concept – so in popularity as in application – that covers situations where citizens are

encouraged to take an active role in the man-

agement of their own health, transforming the

traditional patient–doctor relationship and providing citizens with real management capa-

bilities. 1

Gibson, in a review about PE in

health, redefined empowerment as a process of

helping people to assert control over the fac-

tors which affect their health. 8 Another litera-

ture review defines PE as a continuous process

through which patients (and patient groups)

work in partnership with their health-care sys-

tem. The objective of this collaboration is to

enable patients to become more responsible for

and involved in their treatment and health

care. 9

Despite differences among definitions, the

central idea is shared: an attempt for patients

to take charge of their own health. Some com-

mon keys are as follows:

1. Health-care professionals should be the first

promoters of PE. 10

2. An empowered patient should be educated

to think critically, make informed decisions

and then adjust to prescribed care plans (i.e.

become a health literate). 11,12

3. Dependency on people should be partially

transformed to dependency on systems. 6

4. Technology for PE may also bring problems

due to digital divide existing in society

between people with and without technology

skills (what is called ‘digital literacy’). 13–16

At organizational level, it is assumed that

PE is a cornerstone for the transformation and

evolution of the health-care domain, becoming

a philosophy inspiring policies and services. 17,18

As an example, the European Commission, the

European Council and the World Health Orga-

nization (WHO) – Europe – are supporting actively the development of PE solutions by

acting in several points such as bringing access

to information and trust advice to people, pro-

moting health literacy of patients or supporting

new models of chronic care. 19

Thus, the con-

cept PE is serving as engine power for increas-

ing the quality of health systems by policy

makers. 20

Beyond psychological implications, empow-

erment of patients in daily practice relies on

technology and the way it is used. 16

As the

application of ICT in the health-care domain

has been performed in an uncontrolled way

and with no formalization or guidelines, now

empowerment of patients (as will be shown in

this paper) is shared by a wide spectrum of dif-

ferent and separate research fields such as

end-user applications, homecare, information

systems and communications. This multidisci-

plinary divergence increases the complexity of

the matter because it often requires a knowl-

edge translation among areas. Moreover, PE

(even the term) is performed through many dif-

ferent ways depending on the specific research

field addressing it. These facts lead to a frag-

mented application of heterogeneous technolo-

gies for empowering patients.

To our knowledge, several literature reviews

focus on PE, but none has both a general pur-

pose and an emphasis on technology. The

scope of these reviews varies in different ways.

Aujoulat et al. 21

examined how the term

‘empowerment’ has been used in relation to

care and education of patients with chronic

conditions over an 11-year period (1995–2006). This review bases on the theory of patient edu-

cation as a mechanism for empowerment in

chronic scenarios and its benefits for patients.

Laugharne et al. 22

had mental health as

domain for their review of trust, choice and PE

from 1980 to 2005. This review stated that PE

How technology is empowering patients? J Calvillo, I Rom�an and L M Roa644

was accomplished at organizational level (e.g.

policies of patient involvement in health care),

but there was no evidence of real performance

of PE in daily practice of mental health care.

Technology applications were not reported in

this paper. Macq et al. 23

reviewed literature to

extract findings of PE in tuberculosis control.

They identified trends and barriers of empow-

ering of tuberculosis patients but did not

include any reference to technology applica-

tions. Another review focused on methodolo-

gies for PE was published by Virtanen et al. 24 .

This paper made a literature review to describe

the nature of empowering discourses between

patient and nurse. The main result was a heter-

ogeneous range of discourse methodologies to

empower patients, but no technology was iden-

tified to do it. Finally, Lober et al. 25

published

a review strongly oriented to find synergies

between health care and ICT. Although its

health focus was oncology nursing, it presented

papers of general purpose. This review mainly

placed emphasis on new models of interaction

between patients, doctors and others thanks to

the Internet and social media as well as known

areas such as monitoring and administration

systems. This was a broad review but with a

research methodology covering rather than for-

mal published papers (i.e. web references, tools

and technical reports).

Through a literature review, our paper aims

at clarifying how technology is being applied

to PE as well as future trends and milestones.

The review focuses on identifying current

trends of technology applied to PE, in particu-

lar, which technologies are being used, how

they are applied and how empowerment is pro-

posed and accomplished. Because approaches

of technology applied to PE have recently

appeared, this paper makes a review from the

year 2000 to October 2012 considering that

prior works are theoretical or related to social

interaction. Finally, although there exist other

concepts related to empowerment for nurses,

doctors and others, 3 considering them is out of

the scope of our review.

Methods

We searched for relevant English language arti-

cles using Medline, Scopus, ACM Digital

Library, Springer Link, EBSCO host and

ScienceDirect databases from the year 2000

until October 2012 (papers in press included).

The first step was collecting articles that

included ‘patient’ and ‘empowerment’ in title,

abstract or as keywords. For the sake of thor-

oughness, several searches were performed by

substituting ‘patient’ by ‘citizen’, ‘user’, ‘con-

sumer’, ‘human’ and ‘subject of care’ but

always with focus on the health domain.

Another set of searches was performed to col-

lect publications with the terms ‘empowering

patients’, ‘empower patients’, ‘empower peo-

ple’, ‘health informatics’, ‘health information

systems’, ‘patient-centred’ or ‘patient-centric’ in

title, abstract or keywords. Opinion papers, let-

ters and reviews were excluded. Figure 1 shows

the selection process for this article review.

Identified abstracts and contents were

screened by two peers in parallel to determine

eligibility for further review. The following eli-

gibility considerations were made:

1. The development, validation or assessment

of technology for PE should be presented in

the article. Those papers expressing opinions

or conducting reviews were excluded;

2. The empowerment action should be per-

formed for the direct benefit of patients.

Technology applied to empowerment of

medical staff, relatives or others were not

considered, even although this had indirect

benefits for patients;

3. Many technology applications in health lead

to more efficient care but not to empowering

individuals. For example, remote monitor-

ing with no intervention by patients, or

EHRs only for health professional use. This

kind of applications means better health for

patients but not increasing the trust, auton-

omy or safe sense of patients. Articles where

patient empowerment is not properly justi-

fied or stated were excluded.

How technology is empowering patients?, J Calvillo, I Rom�an and L M Roa 645

From the eligible papers, the reviewers

extracted data such as publication year, if they

were focused on particular medical specialties,

technology used or how PE was claimed to be

achieved.

Results

Searching the online databases resulted in

12 389 articles. After combining results and

excluding duplication, 9540 articles left. Later,

reviews of abstract and content were per-

formed. 9087 and 187 articles were excluded,

respectively, according to eligibility criteria pre-

viously defined. Thus, only 266 papers satisfied

all the requirements of the process. The set of

references included in the review can be con-

sulted via web. 26

As first point of this review, it

is worthy to mention that the number of

articles published about technology for PE has

increased notably. However, the number of

papers does not follow an exponential ten-

dency, but it presents an increasing variability

between consecutive years (Fig. 2).

The articles selected have been classified

according to the medical specialty or disease

which the technology developed is planned to.

Figure 3 shows the results. Technology in

45.9% (123) of articles is applied to all knowl-

edge areas of health as in the case of medical

information management or patient education.

Both examples may cover the whole range of

health issues and diseases. 11.5% (31) of arti-

cles focus on medical specialties (e.g. dermatol-

ogy and paediatrics), and 13.6% (36) present

solutions applied to some specific disease (e.g.

HIV and depression). Diabetes (10.8%, 29),

oncology (8.2%, 22) and chronic diseases

Scopus Search strategy

(n = 4.186)

Medline Search strategy

(n = 6.285)

ScienceDirect Search strategy

(n = 595)

Combine results (n = 12.389)

Abstract review (n = 9.540)

Exclude duplicates (n = 2.849)

Content review (n = 453)

Excluded in abstract review

(n = 9.087)

Articles included (n = 266)

Excluded in content review

(n = 187)

ACM Digital Library

Search strategy (n = 213)

Springer Link Search strategy

(n = 613)

EBSCO host Search strategy

(n = 497)

Figure 1 Flow of article selection in the literature review.

0 5

10 15 20 25 30 35 40 45 50

2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012

N um

be r

of a

rt ic

le s

Publication year (until October 2012)

Figure 2 Number of articles published on technology for patient empowerment over the years.

How technology is empowering patients? J Calvillo, I Rom�an and L M Roa646

(5.2%, 14) have been classified separately due

to the relevant number of articles on these top-

ics. Finally, technology in 4.8% (13) of

reviewed papers is centred on other areas such

as Pharmacy and Lactation, which cannot be

grouped easily by the previous categories.

Once determined the health issue in which

PE is approached, the next point is to classify

what technology is used to accomplish it

(Fig. 4). Web services and communication net-

works are the most used technologies (74 and

51 articles, respectively). Both technologies are

applied to different scenarios and purposes but

always easing remote communication and

access to health information and services.

Besides them, both PHR and Electronic Health

Record (EHR) approaches share outstanding

positions. The reason could be that they have

been considered cornerstones for the techno-

logical revolution of the health-care domain,

and there are many efforts developing them.

EHR and PHR are similar each other although

address PE differently. EHR provides the

patient with access and knowledge of his/her

health information; meanwhile, PHR grants a

patient with administration privileges too. 27,28

Another relevant set of approaches focuses on

translating the methodology of patient support

groups to virtual world using social media and

online communities. In these scenarios, the

patient receives advice from peers and he/she

can be an information provider for others.

Finally, other relevant technologies are as fol-

lows: Internet as source of information, soft-

ware and mobile apps, security mechanisms,

devices and communication media (such as tra-

ditional and IP telephony or e-mail).

The last point of this review categorizes how

the different approaches empower patients. The

same technology may deploy two different

General 45.9%

Medical specialties

11.5% Diabetes

10.8%

Chronic diseases

5.2%

Oncology 8.2%

Other 4.8%

Specific disease 13.6%

Figure 3 Classification of selected articles according to the

health area where they empower patients.

N u

m b

er o

f ar

ti cl

Technology applied

Figure 4 Number of articles categorized by technology they use to empower patients.

How technology is empowering patients?, J Calvillo, I Rom�an and L M Roa 647

approaches for PE. For example, e-mail com-

munication could be used for strengthening

doctor–patient relation or alerting patient of modification of his/her health information

record. Figure 5 summarizes the findings. Note

that most articles adopt two or more mecha-

nisms for PE. The most popular way for

empowerment is patient education, shared for

40% of reviewed articles. It is widely argued

that an educated patient can make more

informed decisions, improve compliance,

reduce anxiety levels and participate actively in

the treatment of his/her diseases. This fact is

more relevant in chronic scenarios where the

patient must modify his/her life and adapt to

permanent conditions. If healthy scenarios

were considered, benefits of patient education

could be translated to the maintenance of

health and prevention tasks through citizen

education. Enhancing commodity of patients is

another important approach for empowerment.

It is accomplished by reducing the complexity

of daily tasks such as the patient–doctor com- munication (e.g. e-mail or instant messaging),

online access to administrative services and tel-

ediagnosis. Self-care is a benefit of patient edu-

cation with a significant number of articles

proposing mechanisms to accomplish it. The

access to own health information and to reli-

able advices improves awareness of patients in

their condition and adherence to treatment

plans. Another relevant paradigm to empower

patients is to turn them into providers of sup-

port and advice for peers. As providers,

patients feel useful, and as receivers, they

obtain support and comprehension of peers

that suffer (or suffered) similar conditions.

Security also counts as a driving force for

PE in different ways. Control of distribution

and disclosure of personal information are the

most relevant PE mechanisms followed by

control over its edition, and privacy and

confidentiality of communications. Due to the

confidential content of health information,

patients are very concerned with security

requirements. Many reviewed articles consider

scenarios with no mechanism to protect data

and communications, but security is an essen-

tial requirement of technology applications in

the health-care domain. Other PE ways are to

strengthen the doctor–patient relation, to access general or personalized information and

to promote behaviour modification, etc.

Discussion

In the introduction section, the objective of the

review was stated: to identify how PE is being

approached through technology and which

milestones would be required to accomplish a

real empowerment of patients. We selected and

described the results of 266 papers on technol-

ogy applications for PE. The number of such

approaches shows a strong increase in recent

years (Fig. 2). Two facts could be responsible

of that tendency: the advancements in ICT

(with the consequent wider application to

health) and the currently rising awareness of

0 20 40 60 80

100 120

N um

be r

of a

rt ic

le s

Paradigms for empowering patients

Figure 5 Number of articles categorized by how they empower patients.

How technology is empowering patients? J Calvillo, I Rom�an and L M Roa648

providing patients with an active role and

capabilities of management.

In a broad sense, the term ‘patient empower-

ment’ is often used in the literature and health

policy to characterize an essential key for

involving patients in their health care. In most

approaches, PE is addressed from a psycholog-

ical perspective (i.e. studies of how health-care

professionals could make patients more confi-

dent and involved in their health-care pro-

cesses), but also in some cases, technology is

applied for empowering patients. Thus, impli-

cations on daily practice are restricted to mod-

ify attitudes of patients (what we classify as

Milestone 1 of empowerment, as it will be fur-

ther explained in the following) and not to

involve them actively in processes.

From the results of the review, some interest-

ing points can be extracted for discussion.

First, there is a wide spectrum of technologies

empowering patients. There are initiatives that

use promising technologies (such as games and

virtual worlds 29

or textile monitoring 30 ), and

others reuse common (and sometimes in disuse)

technologies (e.g. audio call 31

or video record-

ing 32 ). According to current and future tech-

nology trends for empowering patients, it can

be stated that approaches in this domain fol-

low the general tendencies of research and

development in ICT. As revolutionary technol-

ogy in every sector of society, Web services is

also one of the most used technologies for

empowering patients. Its application covers

several approaches such as information web

pages, interactive portals, infrastructure of dis-

tributed services and remote data access. Its

versatility, popularity and development in

other domains make it the first choice for

developers of solutions in health domain.

Booming technologies in other sectors (e.g.

social media and mobile apps) are being stea-

dily applied to empower patients. Forums,

blogs and social networks are suitable vehicles

to translate support groups from real life to

electronic world, ease the communication

among patients and professionals and

strengthen the continuity of care beyond

physical appointments. In addition, the wide

adoption of smartphones in daily life brings

many potential trends for patient empower-

ment such as ubiquitous access to health infor-

mation for patients and professionals or

smartphone applications for monitoring

chronic conditions, disease prevention tasks

and promotion of healthy habits.

Finally, an interesting result is the slightly

higher use of PHR (12.7% of articles) for

empowering patients than of EHR (10%).

According to public opinion, PHR is a natural

evolution of EHR towards a real data manage-

ment by patients. Thus, the common assump-

tion a priori is that PHR would be a much

more significant trend for empowering patients

than EHR. But that is not right because

although EHR does not delegate management

capabilities to patients, it contributes to

empower them through the access to their

information. Often, the scenario of patients

suffering burdens for accessing their own

health data is underestimated or not consid-

ered. But our review reveals that is still a nec-

essary action line without which other

approaches (such as data management in

PHR) cannot be addressed.

From the literature review, we can conclude

that different levels of empowerment exist (as

has been stated in previous works 33 ). All the

reviewed approaches have the same objective

(i.e. to empower patients), but the grade of

autonomy or involvement that the subject

obtains varies from one solution to another.

These levels of empowerment may serve as

overview of milestones in the road of patient

empowerment.

1. Milestone 1: Patient is aware of his/her

health condition and properly informed by

doctors. There is a first change of attitude

from passive and ignorant to active and par-

ticipant to face diseases. In this stage,

patients are well informed about prognosis

and treatment options, and this makes them

to be more likely to make decisions, adhere

to their treatment plan and have better out-

comes.

2. Milestone 2: Individual (not necessarily

patient) active not only in the treatment of

How technology is empowering patients?, J Calvillo, I Rom�an and L M Roa 649

diseases but also in the maintenance of his/

her health and prevention tasks. Now citi-

zen is willing to perform healthy activities,

monitor food and hygiene habits, modify

damaging behaviours, etc., in order to pre-

vent diseases or enhance his/her wellness.

Doctors play the role of encouraging these

attitudes which result in a healthier popula-

tion.

3. Milestone 3: Citizens are educated (and not

simply informed) in health. A democratiza-

tion of knowledge is accomplished, that is,

citizens can proactively access information,

knowledge and advices not guarded by

health professionals. Health knowledge must

be understandable, reliable and accessible

for any citizen according to different skills.

Now doctor and patient are collaborators at

the same level, and there is a mutual trust.

Figure 5 shows how education of patients is

the first concern (with 39.4% of selected

articles). From their point of view, doctors

plead for educated patients that adopt effec-

tively their care plans and willing to know

more about their health conditions.

4. Milestone 4: Citizens are not only health

information sinks but also sources. Technol-

ogy allows citizens to act as health informa-

tion and advice providers for peers

worldwide with little or no supervision by

doctors. Citizens embrace a new dimension

in empowerment when their health experi-

ences can help others and when they are

counselled by people who speak their own

language.

Finally, there may be some obstacles against

patient empowerment. First, citizens must able

to trust in technology empowering them in

order to play their proactive roles. Thus, con-

sidering carefully, the application of technology

to empower patients is required. For example,

Web pages as information sources are promis-

ing for rising health literacy of patients, but

they can lead to misunderstandings and wrong

decisions without a precise assessment by trust-

worthy third party; or privacy and confidential-

ity of information flows from/to EHR and

PHR should not be a secondary feature of sys-

tems. Indeed, security is an essential require-

ment on communication and health

information systems, but only 6% of articles

focus on (or include as complement) security

mechanism.

Another major obstacle is reluctance of doc-

tors to lose their power. Health professionals

encourage citizens to be informed and adhere

to their treatment plans, but sometimes more

knowledge is not desirable. This fact is conse-

quence of people using Internet as first source

of health information without considering the

harm that unreliable and understandable infor-

mation can make. But a well-educated patient

through precisely assessed information sources

by health professionals is a win–win scenario. Obviously, also citizens may desire to hold the

status quo, that is, maintain a passive role on

their health, as some studies pointed out previ-

ously. 34

Thus, involved actors’ attitudes

towards PE will determine the real swift of

health-care delivery models and the role of

each actor.

Conclusion

In conclusion, practical approaches to

empower patients vary in scope, aim and tech-

nology. The set of areas where empowerment

may be accomplished is so wide (as was

showed in Fig. 5) that almost any current ini-

tiative of ICT applied to health covers mecha-

nisms for empowering patients. As has been

reviewed, there exist different (in scope and

autonomy grade of citizens) levels of empower-

ment that may be mapped to specific mile-

stones. Current technology already allows

establishing the first steps in the road ahead,

but a change of attitude by all stakeholders

(i.e. professionals, patients and policy makers)

is required. Furthermore, despite motivation,

PE strongly depends on accessibility of solu-

tions and interfaces. For a real empowerment

of patients, all citizens must be capable of

accessing systems empowering them, no matter

their digital literacy, economic level, education

or disabilities. 35

Therefore, if obstacles and

How technology is empowering patients? J Calvillo, I Rom�an and L M Roa650

gaps are successfully addressed, at medium-

term technology will ease the emergence of a

new patient fully equipped for the health-care

challenging scenarios of the 21st century.

Source of funding

This work has been partially supported by the

CIBER-BBN (inside project PERSONA), the

Biomedical Engineering Group at University

of Seville, an Excellence Project of the Anda-

lusian Council (TIC-6214) and a grant from

the Fondo de Investigaci�on Sanitaria inside

project PI082023. CIBER-BBN is an initiative

funded by the VI National R&D&i Plan

2008–2011, Iniciativa Ingenio 2010, Consolider Program, CIBER Actions and financed by the

Instituto de Salud Carlos III with assistance

from the European Regional Development

Fund.

Conflicts of interest

No conflicts of interest occurred.

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